Wednesday, March 28, 2012
Update: Picture Extravaganza
Drew is Two
Monday, March 26, 2012
3rd Day

( this picture is right after Henry was born, what a tiny guy)
Today when I visited Hank, he looked a bit better to me. He sure is a puffy little boy though. His nurse was letting him wiggle a bit to try and work down some of his edema. It was fun to see him move around.
He is still in an open warmer bed and can't be held. He really hasn't been cleaned as not to stress him too much. He really needs a bath, but I guess that can wait.
Henry has definitely got some sort of infectious process going on. His blood cultures are still not growing anything though. He is on day 2 of his new antibiotics, and hopefully they will take care of that sooner than later.
Thank heavens, the cardiothoracic surgeons removed his chest tube today and Hank looks so much more comfortable. That's a positive.
Because Henry hasn't been keeping his oxygen sats up, the neonatologists switched him from an oscillator type ventillator to a regular ventilator. He really seems to like that much better and has had better numbers. He does have chest x-rays twice a day to make sure his lungs are not getting over-ventilated.
No blood products today. Yipee!
His heart ECHO today showed that his ductus has closed, but he does have a small hole in his heart that they are watching. They aren't sure if it is a PFO or not. The right side of his heart (the side that pumps to the lungs) seems to have to be working a bit harder and seems enlarged. This is something we will be watching.
Status overall seems to be fairly stable. Maybe a little tiny bit improved.
My favorite things today:
1. Henry squeezing my finger
2. Henry's curly blond hair
3. An ECHO tech that took care of Henry the whole time he was in my belly came and gave him a visit. What a lucky kid! He sure is loved.

Posted from my iPad
48 hours
1. Had an ultrasound of his brain. This was to check for bleeding because Henry was not super responsive and a bit "floppy" in his muscle tone. Good news... All normal.
2. Started two new antibiotics and stopped one. This is because his CRP (c-reactive protein) and white blood count were high. The docs thought that this could be a possible reason he was not having high oxygen saturation levels. Hopefully his new antibiotics (zosyn, vancomycin, gentamicin) will help.
3. Recieved more fresh frozen plasma via his IV. Still trying to get those blood coags to normalize. Hopefully soon!
4. Started total parenteral nutrition (TPN). This is a way for Hank to get the nutrition he needs to grow since he is not taking any thing though his mouth, yet. He gets fats, proteins, and sugars this way (plus a few extras). This will help him to grow so he can get his internal pacemaker.
5. Had a heart ECHO. This showed what we thought. Heart structure and function are good. Does have a patent foramen ovale (PFO) which is common in premies. He also has a patent ductus arteriosus. Usually this can close on its own, but if not, drugs can be used or a procedure to close it with a clamp. The good thing is, he is not shunting blood in the wrong direction which would cause fluid buildup in Hank's lungs.
6. Still has his chest tube in from his little surgery. This is draining any fluid left in there. The fluid is about dried in the the tube, so that will probably come out day 3. Yipee!
7. Got some steroids through his IV. Solu-cortef.
8. Got really wiggly this afternoon. Mom and dad are super pleased about that.
9. Has a double chin and fat fingers. (Just like his Mom has had while she's been on steroids). This fluid will be reabsorbed later and peed out. Pretty common in sick premies.
10. Heart is still being paced at 125 beats per minute. It was sure fun to see his heart in the ECHO beating that fast. I really am not use to that at all.
11. Started bili lights. This suntan should help him to get rid of excess bilirubin and prevent jaundice. He gets to wear awesome shades and now mom and dad really can't see his face at all. Poor guy!

Busy day for a little tiny kid. We're just trucking along. Little changes everyday.
Posted from my iPad
Sunday, March 25, 2012
First 24
Obviously, Henry is in the NICU at Primary Childrens Hospital. He was born on Friday, March 23, the same day as his older brother, but under much different circumstances.

I (liz) was down in SLC for one of my weekly fetal ECHOs to check Hank's heart and body for any excess fluids. The cardiologists thought they saw a little more fluid than usual, so they sent me up to maternal fetal diagnostics at University Hospital to have a full ultrasound. There was fluid found, but not a lot. The bigger concern was Henry's size. They thought he hadn't been growing to well. So, after discussion amongst many doctors and some risk assessment, they decided to take Hank that day. I was 30 weeks along.
They scheduled my C-section for 9:30 that night and Steve made his way to Salt Lake. The c-section was a piece of cake and Henry was born around 10:15 pm, 45 minutes later than Drew's birth time. They took Hank away though the window, even before I got to see him. Steve saw him though. He cried a little, and was a wiggler. Once they stabilized him in the NICU at the U of U, they transfered him to Primary Childrens NICU.
He did pretty well over night. I was told he was "vigorous" and fairly active. He was put on a ventilator and given surfactant to help develop his young lungs. Antibiotics were also started, pretty standard. His heart rate was pretty slow, in the 50s and 60s, so they decided to wait on any surgery for pacemaker placement.
The next morning, things had changed a bit. Henry was doing okay with the ventilator. He was also on room air and doing well. His platelets were low and his blood clotting factors were off, so he recieved quite a bit of platelets through his IV. He also got some other products called fresh frozen plasma.
They decided that since his heart rate hadn't changed, they wanted to go ahead and do the surgery for his external pacemaker. Henry is too small for the internal pacemaker, so for the external pacemaker they do a small incision place the pacer wires on the heart and close it up. And that they did.
After the surgery, Henry has had a rough go. They gave him a paralyzing agent for the surgery, along with sedatives that he had been getting to keep him comfortable, and he was not super responsive for the whole rest of the day. A bit worrisome for me. Also, his breathing got worse and his oxygen levels went down. He had been on an oscillator respirator which esentially gives him fast, tini tiny breaths, almost like panting. This is very gentle on his lungs, but his body is constantly pulsating with the rate of the oscillator. They turned this up to 100% oxygen which did not help to much. They also added nitrous oxide to try and help. They decided to raise his blood pressure with a drug called dopamine and that did seem to help some.
When we checked on him that night around 10:30, his coloring was much better. He sure is one sick little guy. Tough though.
Sorry about the book. I will try not to write so much next time. I have pictures on my camera bur haven't uploaded them yet. I will post them when I do.
Posted from my iPad
Saturday, March 24, 2012
Happy happy birthday birthday
Welcome baby Henry. 2 pounds 9 ounces. Almost 15 inches. Doing okay for now.
I guess a birthday is just one more thing Drew will have to share with his baby brother.
Sunday, March 4, 2012
a while
I guess I haven’t posted on here in a little while, but I did have a few pictures of what Drew has been up to as of late. It’s surprising how much he changes from day to day as he gets closer to his second birthday.
Watch this video of Drew doing one of his favorite things (singing). This was about a month and a half ago, so we have improved a bit.
Henry update:
Henry is doing about the same as last time I posted. His little heart is still so slow, but he hasn’t had any poor outcomes from it so far. We have lasted this way for about 8 weeks now and hope to continue for 4 to 6 more at least. He is definitely growing and is normal size for his gestation which is a great sign for him. What a tough kid.
I did get to go to Madison, Wisconsin and meet with some doctors and equipment that tested Henry’s heart further. They haven’t got the official results, though most of the results they did have showed us what we already knew. There were a few things that Henry showed that had been positive in other babies like ours, so that was a relief.
Back to Drew:
Here are a few pictures to enjoy.

